Sunday, January 2, 2022

Hoping for the Best

I have a very simple New Year's Resolution this year. It's, of course, not the first time that I've taken to this blog for resolutions. Over the course of ten years of on and off blogging (mostly off these last few years), I've resolved to feed my mind, body and soul, and to be more accepting and have fun, among other things.

But first a little backstory. I am an optimist by nature -- territory I've also written about over the years. But theses past two years have tried the faith of even  the most eternal optimist. You may have noticed there's a pandemic out there that's killed millions, turned lives upside down, and tested the resilience of individual, family, and community. 

So on the one hand, you have the pandemic, and on the other hand, cancer. Scans in early 2021 showed tumor growth compared to my 2019 scans and as I booked my November appointment, it was with the expectation that we would be talking about treatment options for 2022. 

The familiar expression is: hope for the best, but prepare for the worst. Smart business planning perhaps, but also a guard against disappointment. Don't get your hopes up and you won't be let down. And I was bracing against the challenges that 2022 treatment might present: how to attend my nephew's wedding in March; how to visit Matthew in Copenhagen during his semester abroad -- presuming it still happened. 

But there's a problem with that thinking; when you prepare for the worst, you start expecting the worst -- or at least fearing the worst -- and that anxiety crowds out any space for hope, for optimism. And it's hard to be happy if you are living in a state of perpetual anxiety.

I like what I wrote back in 2013 when I said that "every year is filled with its moments of greatness, of pure happiness and gratitude... Sometimes, they're so tiny, so fleeting that you can miss them if you don't pay attention." 

If you're too busy expecting the worst and preparing for it, you can easily miss them.

A funny thing happened in November. Instead of my scans showing more growth, they actually showed some smaller tumors and others pretty stable. Will I need more treatment in 2022? I don't know. Right now, I have an appointment in a couple months and then more scans in August. So we'll see. But importantly, I feel fine. (I ended 2021 and started 2022 with a run.) And  so I'm simply going to hope for the best. Period.  

And that leads me to my New Year's Resolution, which is simply this: I will allow myself to Be Hopeful; I will allow myself to Be Optimistic; and I will allow myself to Be Happy

It's a resolution I hope a lot of people take. 


Friday, July 23, 2021

On Ten Years



Approaching the 10-year mark of being diagnosed with follicular lymphoma, I anticipated the day being momentous -- not necessarily a celebratory day, but a memorable one. I would post something on social media, note it in a few lymphoma groups to which belong, maybe even recognize the day here on this quasi-dormant blog. The reality is, I forgot about it. The day came and went, and here we are three weeks later. 

This is a good thing. 

On July 1, 2011, the day after I was diagnosed, here's what I wrote:

"When I think of the future and try to project out 10/20 years, that's when I start to lose it. When I focus on the present -- how I feel today -- fine, thank you-- I'm calm and rational.

I remember eating dinner before my softball game while Noah and Stacy played alphabet go fish. I was watching him play and he was getting silly and having the greatest time -- laughing and playing -- and I wasn't thinking about my dx at all."


And so here we are, 10 years later. Noah's no longer playing alphabet go fish - he's a rising high school senior and   Matthew's halfway through college. We have two dogs and I've been through two different treatment cycles - six rounds of Bendamustine and Rituxan in 2012/2013, and four rounds of Rituxan plus Imprime in 2017,  and I'm still feeling fine. Always have been, even if it's likely that I'll be doing another round of treatment in 2022. But 10 years later, there are many more options than there were in 2012, and things like CAR-T Cell therapy are there as possibilities, along with some of the more "conventional" treatments.

Days pass often when my lymphoma hasn't even crossed my mine; but days pass when it has. When I think of retirement or of buying our own lake house instead of renting one for a week each summer, there's a little more urgency to do it now and not put it off for five or ten years. It's not necessarily a seize-the-moment kind of thinking, but it is a reminder that you can spend so much time planning and thinking about what you're going to do, that you can leave yourself little time to actually do it. 

So this is life with follicular lymphoma. It's not a dark cloud that overhangs my daily life, but more an occasional storm that I can sometimes spot on the horizon, and hope that it blows through our life quickly and with little damage in its wake. 


A view from the Narrows looking out at
 Upper Bay on Little Sebago Lake


Thursday, February 27, 2020

About My Dad

This is where the blog pivots for a moment. My health is good.  I’ll see Dr. L in a couple weeks for the first time in six months and then will return to posting about health and cancer.

For now I want to write about my father.

My dad died two-and-a-half weeks ago but this feels like the first week without him. We buried him last weekend and in the days leading up to the funeral, we were all so busy with the logistics of deconstructing a life 89 years in the making that it felt like he was still with us. But this week, in the calm after the chaos; in the return to quotidian life after the abrupt disruption; in the gradual lifting of the fog, I feel his absence acutely.

I feel his absence in the stories I read. I feel it in the places I walk. In the food I eat. In the music I hear. In the trivial happenings of my family life, my work life, my life that I want to share with him.

I feel his absence I in the myriad mental notes I make to tell him next time I talk to him. But there will be no next time. And I desperately want to talk to him one more time.

Many more times.  

This is the first post I will publish where I won’t talk to him in the days following with a conversation that begins: “I read what you wrote...”

We were lucky. Both our parents lived well into not only our adult lives, but also their grandkids lives. They left countless memories and an imprint of themselves; their personalities, behaviors, idiosyncrasies - all firmly in our minds and hearts. 

The challenge, I think, as we grieve, as I grieve is to turn the absences we feel into presences, and to feel that presence in all that we do. 







  

Saturday, February 9, 2019

Blog Reset - We'll Get There

Spoiler Alert... I'm fine.

There, got that out of the way. In the event that there were enough readers of this little blog to divide into two different categories, then it would be as easy as not to divide the readers into two types - those who read to generally check in to see how I'm doing,  and everyone else.

It's for the first type that I say, I'm fine. Because some of you, I know, will get the alert that I've published a post and will think, uh-oh what's wrong. Maybe you won't say it that way, but you'll think it.

One year plus. That's a long time without a post and I'm going to avoid spending time talking about how I haven't posted for a long time and what that means, because really, it doesn't mean anything. But a quick recap, for those who have been following along and lost track, and for those who haven't been following.

I'm now about 8 years out from initial diagnosis of follicular lymphoma, a type of non-Hodgkin Lymphoma (or nHL);  I'm almost exactly 6 years out from finishing my first treatment. That was six rounds of Bendamustine (a traditional chemothearpy agent) and Rituxan (a monoclonal antibody). I tolerated the chemo well; kept my hair, stayed at work except for one day a month; went to Disney. And most importantly, the treatment worked. I'm also about a year plus out of a clinical trial of Rituxan + Imprime. That also seemed to work.

But "working" is all relative. Follicular lymphoma is a chronic disease, and cancer as a chronic disease means you keep weeding the garden. You keep whacking away the weeds, getting rid of the cancer and hopefully doing a good enough job so that it doesn't grow back at all; or if the weeds do back, they don't grow back too quickly; or if they grow back, they aren't resistant to your method of weeding; or if they are resistant, you can find another way to weed whack.

Weeding is annoying. I mean, I love the finished product of a neatly manicured garden with evenly spread mulch. It's the getting there that is annoying, at least.

 But to quote my friend, Allan Osborne, life is good. I'm feeling fine, doing my regular checkups, getting my monthly massage, and running.

Meanwhile, we're getting ready to send our senior off to college in about 6 months time. And, if I'm going to be honest here, I'd say that milestone event is part of my return to blogging  motivation. He just walked in while I'm sitting here writing this and, lifting his head momentarily from his phone, asked if I was doing work

"No, I'm blogging."

"For work?"

"No. For me."

"I didn't know you had a personal blog."

"Yes, you did."

"No. I didn't

"We've talked about it. I've been doing this on and off for about 7 years.."

" I just assumed that was for work."

"Nope. It's my personal cancer blog."

"Oh. So sort of like work."

Sigh.

That wasn't the impetus for this post. That was merely the interruption. But when I, god willing, am in my 80s, and my boys are all grown up and have finally left our basement and have moved into their own basement. I want them to remember who I was in my 50s and before -- not from dusty memories and faded photographs (yeah, yeah... digital photography doesn't fade, but give the writer a little space here) -- but from where my mind and soul was. And it's a writer's words not his eyes that are the window to his soul.

Time for a tangent.

I started writing when I was an angst-ridden teenager. Through college and beyond, I continued to write -- pretty poorly, I might add, except for the occasional accident of stringing a couple of clever lines together.  But sitting on English Beach in Vancouver, BC., in 1986 I realized that writing --  being surrounded by words, poems, stories, books, creative expression - that's what I should do. That's what I needed to do. Three years later, I had my Masters in English and American Literature, having finally passed my foreign language competency exam (Mon Dieu!) and was a staff writer for a business magazine. I've never looked back --  metaphorically speaking.

The point being, writing is my happy place. That, and running. And reading good books. And doing crossword puzzles. And hanging out with friends and family with a nice beer, preferably a good craft brew. And traveling. And playing soccer. Okay, I have an abundance of happy places.  But writing is not just a happy place; it's how I process meaning; how I understand life; how I best express myself;  how I think out loud.

So do I pivot this blog away from cancer? Probably not. 

But maybe.

Maybe I don't need a road map (boys, that's what people used before Waze) to figure out where this blog is going. Maybe it'll just get there on its own. Wherever there is.

--michael